Thursday 27 February 2014

The Other 'F' word.

I've been on the 24/7, 365 day chronic illness ride for years now. And it's a not a ride I recommend.

It reminds me of the first time I went on the Cha Cha at our local show. For years I'd begged my parents to be allowed on the ride. But I was always too young, too short, too something. When I finally managed to convince them I was ready, I was filled with excitement. I stood in line for 20 minutes, little red ticket held tightly in my hand. I was barely able to stand still with anticipation of what was to come. Then I stepped into the carriage. Strapped myself in. Felt the first stirring of the machine and...., it was meh. We went round in circles, in and out, up and down, but there was little of the excitement that I'd built up in my young mind. All that anticipation, all that waiting, all that disappointment. It was immensely frustrating. Just like life with chronic illness.

By that I don't necessarily mean the physical symptoms that accompany a diagnosis. They are not fun to deal with. They can be challenging and downright scary at times. They stop you from doing what you want and impact all aspects of life. But that is a small part of the frustration. 

Frustration comes from dealing with the system that is supposed to help you when you become ill. It comes from waiting. Waiting. Waiting. Waiting. I swear I have spent most of the past 8 years waiting. Waiting to get into see a doctor. Waiting to get the tests they recommend booked in. Waiting for the results to come back. Waiting to get back in to see the doctor to discuss the results. Waiting to get the medication recommended. Waiting to see if it works, does nothing, or makes you worse. Waiting to review it at the next appointment and so on.

I have had times where I waited so long to simply be triaged to get an initial appointment with a specialist that my referral ran out and I had to wait again to see my GP to get another referral to then be sent off to then be re-triaged. Ugh. It does your head in.

Wait for this. Wait for that. The "Lets wait and see" approach to medicine, is an instant mode of frustration for patients. Lets wait and see if the symptoms you are experiencing get worse. Then we may see if we send you for tests or try a medication. Wait for worse. Wait for time to go by, for life to go by. Wait for worse, for a potential of help, with an equal potential for no help. It's easy to tell a patient to wait. It is hard to be that patient. Living with illness 24/7, not just the 10 minutes in an office.

Wait for this program. Wait for that med. Wait. Wait. Wait.

Don't worry, you're sorted. We'll get you A, B and C. Oh wait no there's a catch. A caveat on page 36 of the deal. You'll have to wait. Jump that hurdle. Find that loophole.

Oh there's a med that will help but we can't get it for you. You don't meet the criteria. You can have it if you mortgage your house, give up your kidney, or your soul.

You can have this test. But not you over there. Why. Because I said so. Because I wont tick this box or sign this form. I am the keeper of the keys and you will bow down before me.

We'll test one leg but not the other. But both are weak? Well pick one, Sophie. The choice is yours.

Wait some more. Try again. I wont read that. I wont ring that specialist. I wont run that test. You looked it up? Keep off Google. Stop self-diagnosing. But no you must be your own advocate. It's okay to ask for a second opinion. Do it. Take control. But only if I say so.

Wait. Wait. Wait. Hope. Try. Disappointment. Hope. Try. Disappointment. The cycle goes on and on. Eat this. Don't eat that. If you don't do what I say you don't want to be better. I have a friend of a friend who's third uncle twice removed knows a guy who has that and he's fine.

Take that med. No that is poisoning your body. There must be a doctor. Try harder. Wait in line. Stop focusing on your illness. Think positive. Fight. Be inspirational. Wait? You're focussing on your illness. Stop that.

Harry's here to help. But only a little. To get you excited. To yank out support at the last moment.

Fight. Fight. Fight. Find the energy. Drag yourself up. Don't concentrate on wellness. Concentrate on the system. Fight it. Jump through hoops. Be a performing animal in the circus and you just may get a treat.

Frustration. Unending frustration. Obstacles. Road blocks. Be a good patient. Do what we say and we'll open the door and let you look through. We'll let you see what's on the other side and then we may or may not let you go through. The rules change. Do you know the password? Can you answer the riddle? Or rub your stomach and pat your head?

Frustration. Wait. Follow the rules. Know the rules. We wont tell you the rules. You must find them out. Follow the clues. And maybe you'll be given a hand. But no the rules have changed again.

Do it my way. Do it your way. Do it this way. No not that way.

Frustration upon frustration. When all you want is the luxury to focus on wellness. To focus on being as well as you can be. 

And the grey hairs sprout and the soul gets weary.

And not from the illness, but from all that surrounds.

Excuse me whilst I step into my background and let out a primal scream. To exorcise the boiling frustration. So I can start playing the game once more.


Wednesday 26 February 2014

Rainbows and sunsets

There are moments in time that seem to collide perfectly, inexplicably, and unexpectedly. Sometimes you don't know that you need one of those moments. You don't know that you need that little light in the dark. Or that the dark even exists. Because you stuff it down. "It" being you. You stuff you down. Deep down. Hidden behind a wall made of the necessity and dross, of day-to-day living. You push yourself further and further down because life says you must solider on. Because the morning shows are full of inspirational people who are worse off than you. Because you feel that you aren't entitled to simply feel the moment. And because if you truly face what is happening to your body, you don't know if you'll be left standing or be reduced to a heap on the floor.

And then an evening comes along. An unremarkable evening. After an unremarkable day. Just another in the long list of hard days that seem to be more the norm than the exception of late. Ordinary. Because life with chronic illness, means that illness becomes ordinary. Until a moment begins. It's first stirrings unrecognised. It's importance hidden because your mind is stuck in the rhythm of the metronome. One foot in front of the other. A slow spirit movement. So far removed from the mind, that its sweetness is not noticed or appreciated until you are in its midst. A moment that will be best appreciated in the days that follow.

And then you look out your kitchen window and see a rainbow poking through the remnants of a late afternoon storm. And something is different. For that one moment you ignore the fact that the window remains unwashed, a fact that you have beat yourself up over for the past few weeks. You ignore the noises in the background. The water boiling on the stove fades. The chopping board and the mix of ingredients on the bench sit ignored. The moment has begun.

It had been one of those days that brings to my mind The Build Up, from when we lived in Darwin. Seasons run differently in the tropics. The Dry, The Build Up, The Wet, The Let Down. Seasons felt in the blood, but The Build Up most of all. When the monsoon clouds would roll in threatening. The air would crush. We would sit on the cusp of a downpour, waiting for relief. Hour upon hour. Boiling black clouds would tease. And then they would be gone. No rain. And no relief. For month after month. Tearing at the nerves. And now, in this little corner of the country, far removed from the tropics, that feeling was once more present. The air had been thick and heavy all day. The winds blowing from the north were hot. Standing outside a physical assault. My knees would threaten to buckle unless I retreated to the ground or stepped quickly back into the air conditioned confines of the house. The clouds kept threatening, but only a few drops would fall, to make the air humid and claustrophobic.

And then there was a burst of heavy rain. Short and loud.

And out my kitchen window a rainbow appeared. Not much of a rainbow. A coloured smudge in the sky. A double-take required to ensure it wasn't the product of my imagination.

But there it was. A little, curved line of colours stretching out across the rumbling sky.

And I was taken by a desperate need to go outside.

Pots were left to boil. Food ignored on the bench. That need eclipsed them all.

And there it was. Shining as the evening darkened. Defying the charcoal sky that surrounded.

It was right. It was all and everything. Seven lines of colour in the midst of seemingly overwhelming dark. I breathed it in. I felt it in my bones. And the beginnings of a smile could be felt.

As it faded in the darkness I turned and was rewarded once more.

I stood in the remnants of the storm. Watching the sun retreat from the day and feeling the earth move under my bare feet. Damp grass below and wet leaves murmuring above. Small cleansing drops from the heavens, wiping away layers of darkness and dust. And I felt lighter for the first time in months.

A first breath or a moments reprieve. Either way it is treasured. I'll hold it tight and bind it to my battered soul. I'll keep it close so I can look upon it at need. And remember the colours in the sky that wiped away the burden of an unrelenting, breaking body. If only for a moment.

Moments upon moments. Moments I needed, even though I'd never even known of that need. Moments whose importance would have been overlooked a day earlier, or day later. Timing is everything. I was ready. And so I saw what was before me.

Serendipity at it's finest.

Rainbows and sunsets. Colours. Light in the dark. A promise of hope and renewal. A reminder that moments occur when you are ready for them. A reminder to embrace them when they do. A hope that all of us find our moments.


Sunday 23 February 2014

"Without your health, you have nothing."

Without your health, you have nothing.

Without your health, you have nothing.

Without your health, you have nothing.

Truth? Lies?

If true I have always had nothing.

My mother used to tell me stories of my early childhood where my neck was lost in a mass of blood and weeping, broken skin, my chin stuck to my chest. Eczema, part of the genetic lottery handed down from my father. My grandmother used to regal we with similar stories about my father, although her's were more in terms of the cost to her, than to my father. Apparently we both had/are nothing.

As I grew, more problems arose. One minute I was running around in the paddocks with my friends and the next I was taken down by joints so inflamed that I could barely move. Pain a constant companion. Pills and potions. Lotions and bandages. Not yet a teenager and once more broken. Nothing.

The arrival of hormones ended with more pain. Surgery. Hips that escaped their sockets as I walked down the street. A uterus that couldn't keep it's cells to itself. A body that grew parts where they shouldn't grow. More surgery. More blood. More pain. Nothing.

The older I became the more surgery that was required. Explore and cut. Remove the offending bits. Take this pill. Try that one. Interspersed with periods of reprieve. My broken body still breaking, just in new and complex ways. Nothingness taken to new and interesting heights.

And now?

Now I am living with illness 24/7. Year after year. With full knowledge that it will never get better.

Is my life a collection of nothingness? As I move on knowing that I will continue to be ill, is nothingness all I have to look forward to?


Lies told to us as children.

Lies reconfirmed in a society that seeks perfection at every level.

Such sentiments reek of the privilege of health. They reek of false lessons. They reek of false security and small ideas. "I have my health," is the new statement of prestige and success. Up there with a new BMW, or a mansion in Toorak.

The ill and disabled become inspirational for simply breathing, because others cannot understand how we continue on in a such a state of constant nothingness.

Avoidance of illness at all costs. If you become ill you have not tired hard enough to avoid the nothingness. You must be judged. You should judge yourself. Bludger. Lazy. Worthless.


Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur. Yet we have so demonised the idea of illness that we fear and judge it.

Advertising campaigns contrast the bright lights of health with the grey world of illness. They see joy vs despair. Friend vs Enemy. The Good vs Bad. A moral argument that is transposed onto those upon whom illness calls. And so we are told that, "without your health, you have nothing."

We set up our children to fail. We set ourselves up to fail. Illness is The End of the World. We catastrophise. We are no longer taught the lessons, that sometime life takes a different turn. That we cannot control everything. That sometimes shit happens. And, more importantly, that we can continue on when it does.

Those of us who face illness everyday. Those who must face their mortality. Continue on. They find a path. They find joy. They live. And they find their everything.

Nothingness is a choice. A choice we are taught. A choice we internalise. A choice that fails us. Health is part of the equation, not all. Health is something that we cannot always control. But a life without health is not a life without value. It is not a life without joy. It is still a life worth living.

There are trials and tribulations. Challenges and tears in the dark. Moments of despair and pain. But there is still life. Beautiful and musical, life. There is colour and song. It is as varied and miraculous as that of the healthy. It is simply different. But it is still life. It still has value.

To teach our children that without health we have nothing, is a crime. We set them up for failure. We set them up to judge, not only others, but themselves. As parents, as members of a global community, we must give them and ourselves the lessons that will best prepare them for life. That will teach them that value doesn't come from perfection, health or otherwise. How can we prepare them for life when we avoid or exclude such an important lesson?

Is it truly a surprise people fall apart when illness and mortality come their way. No wonder they/we struggle. We are so ill prepared for the concept of a fallible body, that we are suddenly thrust into a world of nothingness. Of no hope. Of fear. Of helplessness and hopelessness. There is no light at the end of the tunnel, because that is the lesson we have learned. We have no skills, no training. Illness is so alien, so other, that we cannot conceive a way through it or a way to live with it. We have failed ourselves in our self-indulgent belief that we have control over the fickleness of life. By ignoring illness, we create our own failure. Where in truth none exist.

To accept the concept of nothingness is to accept that a whole, often inevitable portion of life is, nothingness. That those around us will experience nothingness. That our loved ones. Our family and friends will live in nothingness. And in nothingness their also exists meaninglessness.

Is that really what we want?

Do we want to write our world as black and white? Good and bad. Nothing and everything. So much is missed in such simplistic thinking.

Life is infinite variation. Life is murky and muddy and grey. It is shiny one moment and dull and tarnished the next. Sometimes the tarnish exists side by side with the shine. Juxtaposed and radiant. Beautiful for it's complexity and challenge.

Because even in the darkness of midnight you can look up and see the stars.

Illness isn't good and bad. That notion of morality is something we have imposed upon it and in turn, on those upon who it comes calling. The cells in our bodies have no such ideology. They simply are. We can anthropomorphise them. We can call up the metaphors of war. But they will continue on oblivious.

Health isn't an absolute. And it's presence, or lack thereof, doesn't define a person or the worth of their life.

I don't have my health. I have never had my health. But I have always had my everything.

And I wont sell a lie to my children.


Thursday 20 February 2014

Slurred lines.

It always begins with that now. The millisecond between thought and speech. The break in programming. For a moment the thought seems clear. Then it slowly dissipates. Delicate filaments of mist trailing out before me. A corner of my mind grasping desperately as if I actually have a chance to hold onto the wisps of my mind. Even as they melt through my fingers, and dissolve completely. Before even that small moment of awareness and coherence fade.

Words are slowed and jumbled. Chewed up and spat out. No. Not spat out. There is no force left. The mush of sound falls from my lips. Lips, tongue and cheeks completely impotent. Even my teeth feel set apart. Out of reach. Immobile and uncoordinated. Separate, yet bound in concrete to my mouth. Impeding the words and sound.

A signpost to all and sundry. The herald of collapse.

Gestures fail as weakness infuses every part of my body. Force of will means nothing when force is replaced with nothingness. A vacuum where no one can hear me scream. More sounds fall from my lips, my fingers point ineffectually, my fabric arms are unable to accompany them in their directions.

Single words. Water. Salt. Sit. Lie. Down. Down. Down. The effort required even for simple communication is exhausting. Each word requires me to collect the tiny crumbs of energy scattered throughout my body. To mould them together. To knead them and weave them. Until enough form is finally created and the single, slurred word can be uttered.

I am rushing. Panic barely stifled. But I am treading water. On the road to nowhere.

The trail of a shaken sparkler obscures the world in front of me.

Darkness avoided. Just. Sitting, slumped on the kitchen floor. Staring at a small wilted leaf of baby spinach that has escaped notice until we are almost eye-to-eye. Shaking. Shaking so hard that later when it is all over, my muscles hurt from the exertion. Water dribbles as I try to scull it down. The salt pot sits in my lap, lid resting on my thigh. I dip my finger in the water and then in the salt and slowly bring it to my mouth. The same small movement repeated over and over. All I can think of is sitting as a child repeating the same movement with the sherbet of a Wizz Fizz. Maybe if I squint my mind I can pretend it is the sizzle of the sherbet and not the burn of the salt on my tongue. Maybe I can see the yellow and orange packet hidden in the stereogram before me if I turn my head just right.

Speech slowly returns. More syllables. More words. More clarity. I reluctantly accept help to rise. Accept help. Two words that grate.

I wait and I push. It won't defeat me. I won't defeat me.

And yet...I stand. And the slurring starts and the cycle begins anew.


Tuesday 18 February 2014

The Long Term consequences of "It's All in Your Head": Thank You.

Thank you to everyone who has messaged or emailed me over the last 24 hours following my vlog. I must admit to having been overwhelmed by your responses. I am touched and saddened by so many of the stories you have shared. Thank you for trusting me with your stories and I hope that in sharing them it can help a little. I may not be able to respond to them all but I am reading every single one. I wish I could send out a collective hug to each and every one of you. So many have suffered thanks to the "it's all in your head" attitude.

Whilst programs such as Beyond Blue and R U OK Day, here in Australia, have made inroads into removing stigma and increasing education of mental health, the stories that have been shared, show just how far we have to go. And that it is a global issue.

Lack of understanding, inappropriate diagnosis, stigma, the continuing effect of the old "hysterical woman" idea, laziness and arrogance, are continuing to put patient lives at risk. Whilst "it's all in your head" remains the easy response to a complex patient and all that follows from that diagnosis, we will continue to suffer.

My heart breaks for those who have the added burden of living with a mental health disorder and face such ignorance. Why would you ever seek the help you require for what is a very real illness when that is the type of attitude you encounter. No wonder people hide aspects of their medical history or don't share their symptoms. A decision that in the long run will impact on their overall health care.

Trust and confidence is being lost and patients are suffering. Mental health, whether the stress of living with chronic illness or a diagnosed mental health issue, needs to be addressed as part of the whole patient. At present a culture has been created where patients fear to discuss any mental health symptoms for fear of being dismissed.

I am amazed at the strength and courage of those who have persisted, sometimes for decades, to finally receive a diagnosis and the treatment they require. Who continue on in the face of dismissal and derision. Parents who fight for their children and husbands who fight for wives. Those who continue on alone when even their family starts to believe that their loved one has a mental health disorder. Cancer, heart failure, multiple neurological conditions, it is across the whole disease spectrum.

In the end it is the most vulnerable patients, who are unable to advocate for themselves, and who have limited healthcare choices, who will pay the highest price for this culture.

Thank you also to those medical professionals who have watched and shared my vlog. It is heartening to know that there are those within the medical community who also see this as an important issue. An issue is desperate need of change.

Please continue to share and comment. It is so easy for these concerns to be dismissed, or such encounters to be seen as outliers, when we remain silent.

This is not just a Dysautonomia issue, it is a patient issue. And it crosses all patient groups. It is also an issue for the medical community. Only together can there be real change.

And this needs to change.

Here's the vlog again for those who missed it.

Here's the piece I wrote for Dysautonomia SOS reviewing the complex relationship between psychology and Dysautonomia.

Psychology and Dysautonomia

Thank you again to all those who have shared their stories. And strength to those who are not ready to share yet. Please know you are not alone.


Friday 14 February 2014


Undone by two mint plants.

Lying in bed today it seems farcical. Farcical and somehow totally appropriate. I looked at them tonight in their shiny metal pot. So unassuming. I ran my hand through the chocolate mint and it's bully boy cousin, the common mint. Inhaling their scent from my fingers. I breathed in deep, sucking in each and every last molecule of scent. They owe me that. Taken down by two herbaceous hit men, that I dared to re-plant. I'd laugh if the consequences hadn't been so unpleasant.

After fighting so hard all weekend it seems so anti-climactic that this was the left hook that lay me on the hallway tiles. I'd fought rounds with pain, with my blood pressure, with my dehydration. Each time the bell would ring I'd get back up on my feet and stagger back to the centre of the ring for my next beating.

I told myself I was winning. I had it in hand. There was a pattern to the punches. I'd fought my opponents before. I knew all their tricks. I saw the dip of the shoulder before the punch, the planting of the feet before the upper cut came my way. I ducked and weaved like the best of them. Float like a butterfly, sting like a bee. I had them on the ropes.

Then I dared to replant two small green plants.

And I didn't even see it coming.

As I slid elegantly down the wall in the hallway and called for help, I knew I'd lost. I felt it in my bones. In my skin and the hair on my head. From my toenails to my eyelashes, the bitter taste of defeat. It sprang from my pours and filled the room. The tears that spring reflexively when you know that you've lost.

Loser. Failure. Loser. Failure. LoSER. FAILURE.

The words get louder with each passing second. I list off my failings one by one. I beat myself up for not being able to manage better. There MUST have been something I could have done. Something which would have won the round. Something I should have known. Something I should have done. Something....

The trip to the ER seems to take forever. Purgatory. I begin to doubt myself. Maybe I don't need to go. Maybe I'm over-reacting. Maybe I just need to lie down for a while. Drink some more water. Take some more pills. Maybe I should say, "Turn around. Lets go home. Only the sick people go to the ER." If only I could form the words. Denial and doubt are belied by my blue lips and slurred words. By my inability to lift my head or walk. But those internal demons, born from a childhood where illness and needing help were a weakness, whisper their vindictive words. They beat me up as badly as my body. Worse. They know the sweet spots, the secret places that hurt the most. Harden up. Hypochondriac. Suck it up. Push through it. You're so weak.

Part of me baulks even as the automatic doors open up at the entrance to the hospital. Part of me expects the triage nurse to tell me to go home. That I am wasting her time. That there are real sick people who need help. But she's kind and concerned. She takes my vitals and listens to my story. She tells me it must be horrible to live like this. That the doctors will sort me out. She gives me the code words that'll break through the barrier that exist between doctor and patient. She tells me not to worry. That it'll be okay.

I sit in the waiting room, floating in and out as I lay my head on my knees. Scraps of conversation. A prisoner, an assault, a guard in for testing. The boy who's stepped on the nail. The boy who keeps kicking the wall as his mother repeatedly asks him to stop. The beep of the door each time it opens. The woman at the desk apologising at the wait. Car crashes, cardiac arrests. Real sickness. Real emergencies. It'll be soon. Maybe we should just go home.

Then the doctor is there and we gain entry to the other side. Faces. Faces filled with pain, uncertainty, confusion. We pass them one after the other. The burly guards standing just inside with the prisoner handcuffed to the bed. The lights so sharp. The stiff white sheets of the bed. Relief as I can finally lie down. Sleep. I just want sleep. I could sleep for an eternity. Questions. What's wrong? What are you concerned about? What have you eaten? The code words fail. My list of medications and diagnoses fail. And the finger sensor beeps again and again as my bloodless fingers fail to register. My blood wont flow for testing. But the questions continue. How do you spend your day? You have what?

A blur of slurred words and half-formed sentences. So hard to think. So hard to concentrate. A hand holding mine. An intake of breath from the hand holder as he tries to explain once more that all I need is fluids. Finally the miracle, a second doctor and an acknowledgement that I know more about my conditions than they do, and the needle is finally inserted. A rebirth after the IV starts to re-inflate my empty veins.

Blue on my lips and blackened eyes remain, but the clarity returns. Snippets of conversation filter through the curtains. The old man and his wife. His third stroke. They know their way around. The woman back from an overseas trip with a weird viral infection. The horrible crashing sounds as the man across from me seizures. Staff running. Codes called.The girl with the broken shoulder, bent over in pain.

Do I belong? The girl who fell down because she potted two plants.

We come to an agreement. I don't need to be admitted. Flooding relief. That there is nothing more that they can do for me. I am released. A buffer in my veins. Extra padding to make it through the next few days where I can practice my left hooks and upper cuts once more.

I roll out past the broken and the scared. Faces peering at me over blankets. I wish I could take them with me. A mass escape from flashing lights and beeping machines. An escape from pain and fear and uncertainty. Relief as the door comes into sight. Freedom.

Rolling through the carpark. It's only inhabitants in the wee hours of the morning. The silence is only broken by the heavy breathing of the weary and the crunch of my wheels on the gravel. I can speak. I can sit up. I am nolonger blue. But I am still broken.

As we drive home I still don't know if I should have gone. Maybe I could have managed at home? Maybe the fluids would have eventually stayed in? Maybe I could have taken an extra pill? Maybe I could have allowed my hand holder to sleep.  Maybe....

This evening I sat out in my backyard and surveyed my small world. Those deceptively dangerous mint plants are thriving. Mocking me with their runners and verdant green foliage. The other pots sit there waiting. Daring me to come on over and plant them.

I have slept the world away today. Waking only to drink and have tablets. Storing up strength. But fresh air is tempting. The sky needs to be seen. The grass needs to be felt.

As I sit in my chair I start to feel dizzy. I look down at my feet and their bright blue, bloodless, toes. I see the blue tinge head up my to my ankles and take a deep breath. If I don't look in the mirror I wont see the blue start around my lips. It's not that bad. If I lie down I'll be fine. I stand slowly and walk cautiously across the lawn. Heading for bed again. I'll win this round.

And this time I wont be undone by a herbaceous heavy-weight champion again.


Monday 10 February 2014

Saturday Night

(A still from Edward Scissorhands* showing Burton’s vision of suburbia, source)

Picture it if you will. A Saturday night in a small town. A nondescript suburban house. Cookie-cutter brick. A collection of impractical right angles. The token attempt to differentiate with the others on the street. A swathe of green lawn. Wind blown plants set out in a rock covered garden bed. Unremarkable to the dozens that surround. Inside. A small beige ensuite. Coffee-coloured tiles. Glass and chrome. A large mirror sits on the wall, reflecting the scene unfolding before it. A couple. The man standing before the woman. He in shorts and t-shirt. She in red dress and grey stockings. Something about his stance suggests a mixture of concern and uncertainty. Something about her stillness jars.

She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air.

He is murmuring soft words of encouragement and comfort. Concern flickers on his face as his composure slips. Gone as fast as it appeared. Calm replacing worry.

She is unable to unbend, stomach pains increase. Partial paralysis of your digestive system is not what good times are made off.

He gently lifts her weak leg. Holding her trembling foot against his thigh as he slowly unrolls resisting compression stockings down her pasty, wasted legs. First the right, then the left. Her legs dropping to the floor. Each foot making a small smacking sound as they hit the floor.

She hunches over as he helps her take off her dress. A reflexive shudder with each attempt to unbutton and unzip. A gasp of pain. Their uncoordinated, combined efforts, would be funny, except for the ever present pain. A moment of fear intertwined with a wave of relief, as the fabric gets caught and is suddenly released as he gently pulls it over her head.

He places her pajamas, the soft, old, comfortable pair, kept just for days like this, on the marbled bathroom bench. The only height that she can reach from her bent position. He steps aside so she can have a moment of independence to dress herself. But not too far. He stands ready in case she needs help.

She emerges. Clothes rumpled and askew, but all parts covered enough. She stumbles, bent in half to the bed. Curling up in sheets as pale as her flesh. Pain and misery eclipsing the world around her.

He helps her sit up slightly at the edge of the bed. A contorted mess of distressed flesh. A fragile dam of tears.

He gently holds her shoulder so she doesn't tumble from the edge of the bed. Handing her the cocktail of pills one after the other. Waiting patiently for her extended hand to indicate she is ready for the next. Gentle words, encouraging, barely heard, between pain and concentration. But the feeling, the emotion behind the words, soak into her.

Shaking hands bring the glass of water to her mouth. A small moment of panic as a pill starts to stick. A small moment of relief as it manages to go down. A cycle repeated for each. Big, small, pill, capsule, an eclectic mixture of sizes and colours. Trying to swallow, when your limbs and body are at awkward compressed angles is not for the faint of heart.

Him, quite unwavering support. A rock. Her rock. Anchoring her tonight, and all the other nights that have become part of the pattern of their lives.

She retreats, shrinking, back down into the bed. Exhausted. Pain, always pain. Spiking and slowly reducing. But always pain. Tears held back by shear will and the strength that stands next to the bed. The strength who has stood next to this bed more times than they can count. The strength that has stood in waiting rooms, in hospitals, in clinics, room after room after room, each step of the way.

He covers her with the sheets. Gentleness out of keeping with what others see, but so familiar to her. He moves quietly out of the room. Turning off the light. Closing the door softly. A quick parting word to let her know he is close by if she should need anything.

She radiates unspoken gratitude for the presence beyond the door. She knows she can do it. That it'll be alright. Because of that presence beyond the door. The super power that is love, flows through the door to cradle her weakened flesh. And she can disappear into crumpled sheets and broken sleep as exhaustion finally wins over pain.

Another Saturday night done and dusted. A moment of greatness. In an unremarkable house. On an unremarkable street.

Love isn't grand gestures. It's not choreographed flash mobs. Diamonds, or dozens of roses.

It's quiet moments on Saturday nights in the tiny coffee-coloured ensuites, of everyday brick houses. It's a steady, gentle presence in the midst of pain and illness. It's the hand that holds another's when they sleep. Transferring strength and comfort in equal measures.

It doesn't shout. But is more powerful for the whisper.


*Mr Grumpy took me to see Edward Scissorhands for our first date way back in 1991. I knew he was keeper right away.

Thursday 6 February 2014

Just to Clarify

I can laugh and smile and have fun AND still be ill. 

When you live with chronic illness you don't get to wait until you feel better to enjoy life. If you wait for that day it may never come. 

So we learn to make the most of our lives.

We choose to live.

We continue to live with illness, with pain, with fatigue, with weakness, with nausea, with all the things our bodies throw our way.

We could choose to sit and be miserable every day, wallowing in the bodies chance has given us.

But we want more from life. 

We see joy where you see nothing. 

We find humour where you see darkness. 

We smile, because our spirits shine. 

Many of us thrive with illness. 

I say with rather than despite, because it is a part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence. 

I am ill. 

The nature of my disorder is that I will continue to be ill. 

I will also continue to laugh and smile and have fun. 

Because for me it is the only way to live.


Wednesday 5 February 2014

It's Just a Flesh Wound aka I'm a Dumbarse.

A few years back I wrote a post about the internal dilemma I face each time a health issue crops up. Well dilemma is probably the wrong word. In reality the dilemma is token at best. The outcome is pretty well decided from the first stirrings of “hmmm, well that's not normal.” I think it's more to sooth myself into saying,“Well you weighed that one up well, Michelle. You looked at the data provided, did a review of your medical history and the examined all the pros and cons. Well done. You Rock.” Whereas the reality is far more, “Shit that's not right. Should I go in? Nah. She'll be right. It's just a flesh wound.”

Normal is not a word I completely understand these days. It might as well be written in Sanskrit for all I can decipher. My view of health and what constitutes a worry is seriously skewed.

Recently I was in having my IV Saline and notice a MET poster on the wall of the room.

Three of the criteria. Systolic under 90 and HR under 50 or over 130 made me giggle. Both of these indicators are so common in a world of autonomic dysfunction. Systolic of 90 is a walk in the park. A complete doddle in fact. Pre-pacemaker low 40s or high 30s for a hr were a daily occurrence. For my POTS friends 130+ occurs on days ending in 'y'. New or unrelenting chest pain again something most with Dysautonomia contend with on a daily basis. We are a walking (okay stumbling, swaying, staggering) MET call.

Normal is relative.

The combination of a skewed normal and a medical system that often treats you like you are lying when your obs don't make sense (I'm looking at you nurse who took my temperature with 3 different types of thermometer before she would believe my reading of 35.2 C.) means I am not a frequenter of the medical system until I am in “dumbarse” territory, as Mr Grumpy would describe it. And even then it's not guaranteed.

Two recent incidents come to mind.

1) We have only recently moved to a new town. About 3am of the first night in the motel I had excruciating kidney pain. Not a first be any means, but still not pleasant. I tossed up that I was taking more desmopressin than usual to cope with the move and our current heatwave, and that my last few kidney tests had come back relatively okay. I knew I was dehydrated, the skin that still stands up on my hands when I pinch it tells me this. But the idea of negotiating a new, country, ER in the middle of the night was just too much to contend with when I was feeling so incredibly unwell (you have to admire the strength of my convoluted reasoning right there). Plus the whole, “I refuse to start the first day in our new town with an ER trip”. That just feels like I'm jinxing myself. So I road it out. When I mentioned it to Mr Grumpy the next day I got the whole “dumbarse” routine. And he's probably right (don't tell him I said that) I should have gone in. I should probably go in now and get fluids, but here I am sitting tapping away on my dying lap top, laying on bed, not going in.

2) Incident 2 is an ongoing one that started the weekend before Christmas. As regular readers will know I received two new diagnoses (Myotonic Muscular Dystrophy and Gastroparesis) and my beloved Great Dane, Thor, passed away all in the fortnight before Christmas. Merry Fricken Christmas, folks! When that weekend I discovered I could nolonger move the toes on my right foot it was a bit of a final straw. I couldn't take one more shitty thing at that point. I had a day of self-pity and sobbing into my pillow. Then I wiped the snot from my face and hit play on the cassette tape known as “Michelle's Hardcore Denial Hits of the Summer.” ER be damned. That's where really sick people go.

I told myself that it'd come back. It was just the lack of blood flow. Or a pinched nerve. You know, the usual suspects. I did the basic stroke routine (perks of having worked in stroke rehab). Then I pretended like it wasn't an issue. By the time two-weeks had passed and I still had no movement I finally thought it was time to see my GP. Needless to say I received another “you're a dumbarse” lecture and she rang my neuro on the spot. Of course their were no emergency appointments, and given the fact I was neither in pain or dying, I decided not to push it and just take the earliest available.

As I lie here today I have minimal movement back. But minimal is some, in my deranged mind. I'm choosing to ignore the accompanying reduced movement in my ankle. What reduced movement? What toes? What ankle? (See, I'm good at this). I have an appointment booked for two weeks to review things. But the idea of having to drive the 2 ½ hrs back to the city so soon after the move is not inviting and I am thinking of cancelling as I have another appointment with her a month later. When I factor in the lack of pain and dying, I can easily reason that it's not that important.

And so I sit here in “dumbarse” territory again.

The place where past negative medical experiences and an impressive ability to normalise the completely abnormal meet.

But you know, it's all okay. It's not like I'm really sick. It's nothing but a flesh wound.

Michelle :)

Update: Since I wrote this post I have had a moment of sanity and have decided to go to my neuro appointment next week. 

Denial is my weapon of choice.

Sunday 2 February 2014

LympheDIVAs Compression Gauntlet Review

Compression garments and Dysautonomia go hand-in-hand. From stockings, to stop the blood pooling in our legs, to stomach binders to try and stop the abdominal pooling that can leave you looking like are about to pop out a baby. Some even resort to a full body g-suit. Your choice of compression garment will depend on where you pool and how bad your pooling has become. But in all cases it's about minimising the symptoms that result from pooling and being able to stay upright for longer.

My legs have always been the biggest source of pooling hence my focus has been primarily on stockings (for a list on my tips for buying compression stockings, including a couple of the main distributors/brands see here). However, the last year or so I have been having more pooling in my hands. My right hand in particular. And it has been painful. I do my hand exercises, I massage the worst spots but overall it is getting worse.

All of this led me to consider the purchase of a compression gauntlet. After much indecision I decided to purchase a gauntlet from LympheDIVAs, who have an amazing selection of colours and patterns available. I have been impressed with their fashionable range for a number of years now, and have often lamented the fact that they do not also make make compression stockings. As such they ticked my two requirements, medical grade compression and, the often elusive, fashion element.

Like all compression wear these are not cheap. I managed to find a gauntlet in the style I wanted as an end of line/no return product on but even then it was still $62 AUD. Not a small investment.

I decided on a LympheDIVAs, Small, Right-handed, 20-30mmHg (Class I) gauntlet, in Deco.

The verdict:

I so wanted to say I loved this product, but, I'll have to say I was underwhelmed by both quality and fit. And somewhat disappointed, as I had been excitedly awaiting it's arrival. (Yes, new compression wear excites me. I may need to get out more.) I'd been looking forward to trialling it and hoped I could report back that it was well worth the money. But for this sample I'd have to say I wish I'd paid full price so I could return it.


Sizing is so important with compression wear. It can also be problematic if you are not a typical size. Even with regards to compression stockings, issues such as bunching and length are common. Additionally, with wear, compression can loosen, hence manufacturers recommend replacing every 6 months.

I thought myself a savvy buyer of compression wear, but alas I was caught out. I followed the directions on the LympheDIVAs site for measurements. I measured twice myself and then had a family member measure to triple check. My measurements fell in to the Small sizing on all three measurements. But my spindly wrists disagree. Even with a Small sizing the wrist portion of the gauntlet is extremely loose and bunches up. It also feels quite bulky compared to the rest of the material. It is only at about 2 inches below my wrist and well into my palm that I can feel the compression.

Compression elsewhere is comfortably firm. Given I have been wearing 20-30mmHg stockings for a number of years now, the pressure on my hand is not worrying. Similar to compression stockings the pressure effect fades after about 30min and I noticed little beyond some restriction of movement. Even after a full days wear it was still comfortable. 


The print/colour is patchy. The primary top hand portion is much like the photos on the website, however the underside and thumb portion down to the wrist of the print are not consistent and has visible lines in the colour. The edging above my knuckles and at the wrist are smooth, however the same cannot be said of the thumb portion which was rough and unfinished. Similarly, the seams on the thumb, whilst expected, are very visible, particularly against the darker pattern of the fabric and rough. Given the price of the garment I would expect a higher quality of workmanship. 

I do have problems with seamed compression garments eg I can't wear a lot of the sporting compression brands as the seams leave me sore and bruised, but the seams on the gauntlet have been okay so far. There are brands that are seamless which may be of interest for those with sensitive skin (eg Jobst and Solidea).

(I thought initially that the lines going from thumb to wrist, were from folds but they are printed onto the fabric. With lighter patches in the block colour up in the junction of thumb and forefinger, wear the dye seems not to have taken.)
(Bunching at the wrist can be seen easily in this picture. And the rough thumb seam, especially at the ball of my thumb.)
(The wrist band is very loose and there is essentially no compression or even firmness for this and the bottom part of my palm.)

(The hemming of the thumb portion is quite rough and uneven. It had hard bundles of loose threads which I needed to remove before wear.)

But the big question is “Does it work?”:

The simple answer is, yes. Although it is hard to tell if I am getting the full benefit given the looseness of the lower hand and wrist portion. The painful swelling I have been experiencing, particularly in the top of my hand is lessened considerably. It is important to note that with good fit over my knuckles I had no issues with blood flow to my fingers, ie no swelling or discolouration, even after a full days wear.

I will continue to wear the gauntlet, given I purchased it knowing it was a no return item I need to get my moneys worth. And even a small improvement in the engorgement in my hand, and associated pain, is a good outcome.

I should add the product has wicking technology which draws away perspiration, which may be important for those who have hyperhydrosis. As I have anhidrosis I was unable to test this feature even though we are in the middle of a heatwave here in Australia.

My tips:

If you have the ability go to a store that sells the gauntlets, head in and view them in person. As someone who cannot easily get to the shops I rely on Internet shopping, but given this experience I would try and make my way to a distributor to see the product and try them on. I did attempt what I thought was my due diligence with 3 measurements, and reviewing the products on both the parent site and others, but in this case it was not enough.

If buying online, I would ensure that I could return the product if it didn't meet my expectations or was faulty. (If in Australia: I was also caught out in that the return policy was restricted to "from 30 days of purchase", given I didn't receive my gauntlet until after 30 days, my return policy was already null and void had this been an option). Admittedly, I may have become a little complacent given I have had no problems before, despite years of buying compression wear online.

If you are even slightly outside of normal it may pay to have a custom product created. I have long skinny arms with the wrists of a 10-year-old girl, it would seem this is not the norm, though I would have expected better fit given my measurements were within the Small sizing. If considering an armsleeve or more gauntlets in the future I would head down this route next time. 

*This site has a fantastic round up of tips and information about compression armsleeves and guantlets. Well worth a read before purchasing an upper limb garment.*

Compression wear of any type are an expensive investment. When money is tight, as it is when you are chronically ill, you have to be incredibly judicious in how it is spent. You want the most bang for your very limited buck. Sadly, despite my high hopes, this gauntlet did not match with it's price.

I did note from reading on the LympheDIVAs website that they are looking at reviewing sizing and even considering custom compression wear in the future. They also welcome feedback so I have penned an email and sent it off to the company. I am impressed that they are looking at introducing custom options, though I do wonder if the additional cost on an already expensive product, will make them prohibitive to many.

I do give LympheDIVAs a huge high five for introducing colour and pattern to the compression market which seems to have an unhealthy obsession with bland. It is the primary feature which drew me to their products initially.

I would be interested to hear from others who have purchased a gauntlet from LympheDIVAs or other brands. Did you encounter similar issues? Did you go down the customised route or buy mass produced? How many have moved onto upper limb compression?

Michelle :)